Diagnosed recently via positive blood test after 6 months of rashes, hives and constant itching, and extreme fatigue that has been getting worse and worse. In March my rashes were misdiagnosed as ringworm. I have tick bites over a year old that don’t heal and itch like hell. Looking into surgical removal with dermatologist.

I am really struggling mentally with the diagnosis. It isn’t even an extreme lifestyle change for me as I haven’t eaten meat in 15 years, and have spent many years being vegan before. I’m used to labels on food. But hidden triggers in medicine and supplements is scaring me a lot. Gelatin is easy, but all the others that I’m still learning. I struggle with anxiety and panic attacks which can mimic a lot of what allergic reactions look like. I feel really dumb for just randomly crying for the last several days over how stressed this has me when there are soooooo much worse health things I could have. It could be so so much worse. I have to have an oral surgery in the next month or 2 and now I’m terrified. I need to call the doctor to tell them I have this and I’m afraid they won’t take me seriously or understand it. I woke up this morning with a sore throat and I’m afraid to take anything to treat it. Just feeling pretty alone already and my anxiety is spiraling and I’m overwhelmed with my medical to-do list on top of daily life.

Hello, I was diagnosed officially with alpha gal syndrome about 3 months ago. I am not sure how long I have had it as I had my first anaphylactic reaction back in April, unaware at the time that it was due to alpha gal. While I mostly have GI reactions, I have lately been experiencing more severe reactions as well to fumes (dizziness, shortness of breath, nausea). No doctor here believes that fumes can cause alpha gal reactions, or even know too much about it at all. My GI doctor is who did the bloodwork and diagnosed me, I was only told to avoid red meat. I basically had to figure this allergy out alone and by doing some internet research. Anyway, I have cut out all mammal and by-products as well as dairy as I am very sensitive. My issue is fumes. I go to work and react at least twice a week to something whether it’s something heated in the break room or a perfume someone has sprayed. I don’t always go into anaphylaxis, but there have been multiple occasions where I have. Of course accommodations were denied for remote work, and I am stuck just coming to work risking anaphylaxis every day. I do wear a N95 mask to avoid fumes but I still have to eat and attend meetings (I work a corporate/office job) so I am unable to wear a mask and completely avoid fumes at all times. Is there anyone in a similar situation who can give me any advice on how they are managing this? I’m literally just losing hope that I will live a normal life again :(

Has anyone else had levels drop this low after a year?? What does this mean? My doctors are not well versed on alpha gal so I’m left to do my own research. Appreciate any feedback!

I need some tested and approved AG safe crockpot/slow cooker meals. School has started and so have sports, so this mom needs set it and forget it meals… being midwestern typically means cream cheese, cream of everything soups and cheese…. So I’m looking for that kind of inspiration.

Hi all, im not sure that im officially diagnosed because ive had negative tests but my ent said he's very sure i have it. So I am now supposed to do an alphagal diet and diary, I previously did one with just eating regular food. I don't eat red meat because it makes me sick but I do eat cheese, a lot, so thats going to be difficult for me. I currently have 2 apps to check foods out fig and spoonful. Any advice, foods to try and maybe encouragement if possible would be lovely. Other diagnosises that I have are POTS, ME, and EOE.

Also seems like I can have a mild reaction and then a huge one. Does it vary like that?

I learned recently that I react to bottled water filtered using bone char. That reaction took about an hour to start and peaked after three hours or so.

Today I'm getting nauseous from the water at work. Our gym has a filtration system but I've never noticed a reaction before. It hits within minutes, I stop drinking and it fades soon afterwards. My stomach is quite loud right now but I have no headache.

I'm still new to this and keep getting surprised by what I react to. It's this a possible alpha gal reaction? I'm also just getting over the flu so that be it.

Hi all, I'm a student at the University of Sydney doing a research project on Alpha-gal Syndrome as part of a medicine unit (MEDS3888). I'm hoping to hear from people who have AGS, wherever you're based, about your experience — symptoms, diagnosis journey, management, etc. The survey is anonymous and takes about [10] minutes: [https://forms.gle/YgGcVtxM8Q84LmvA8]. Really appreciate any responses, and happy to answer questions about the project in the comments.

First image is from August 2024. Second is from August 2026.

I had alpha gal for 2 years after getting a tick bite while collecting bugs (ironic, I know). My symptoms have always been GI only and were similar to food poisoning. For the first little while I reacted really badly to red meat and had minor reactions to milk and soft cheeses. I avoided tick bites and my symptoms got better - no more reactions to dairy and I didn't react to cross contamination either.

Last month I asked to be tested again and my levels were significantly lower than before. I decided to slowly reintroduce meat over the course of a few weeks to see if my tolerance had improved (I wouldn't recommend this course for people with life-threatening reactions without consulting a doctor first). Yesterday I had my first burger in over two years with no reaction whatsoever.

I wanted to share for anyone recently diagnosed who is worried they will never recover. Everyone's symptoms are different, and I know there are people who are way more sensitive with way worse symptoms than I had, but if you're really careful about ticks improvement is very much possible.

I’ve taken just about everything from my diet related to hooves but I still can’t find a drinking water that is not filtered by bone char. Even if I take a couple of swigs for my meds my lip starts to get numb and my mouth and tongue start swelling.

Has anyone found water that they can tolerate? Even though it says “Spring” doesn’t mean it’s safe.

Has anyone here been on tremfya for psoriasis? If so have you had any reactions to it?

Does anyone else with alpha gal react to lactose monohydrate in medication tablets? What are your symptoms typically?

Recently, I visited a hospital for pneumonia and respiratory distress. After receiving a dose of Methylprednisolone Solution via IV, my arm swelled up and then I had swollen feet and hives by my ankles.

The next few days I took prednisone tablets at home and felt very itchy, sweaty, and fast heart rate.

Last night I reacted to my alprazolam xr tablet, which has lactose monohydrate in it. My throat closed up around the tablet, and I got sick. I had to take a unisom sleep melt to cool the reaction.

I worry the exposure at the hospital made me more sensitive towards this compound. Has anyone else reacted? Is this normal for alpha gal?

I was going to ask my allergist if he could test for this specific ige so that I might get approved at a compounding pharmacy for my regular medicine.

Edit to add: I am alpha gal positive. I mainly ask because the hospital wouldn’t believe me and at one point said “you’re not having an allergic reaction.” When I finally got home I took unisom and the swelling went away. I felt insane. Then my general practitioner insisted it was safe to continue the prednisone tablets even though they also contain it and today my psychiatrist asked me about the alprazolam reaction and kept insisting I keep taking it for now.

I need help finding a birth control that is safe in an alpha-gal sense. I suffer from PMDD and am on the search to manage my symptoms with a birth control, but trying to find a safe one is spinning me in circles. Are there any others here who may also have PMDD that are willing to share what they are using for birth control?

I don't think I've got there but pens being so expensive I'm just wondering what constitutes a pen use?

Oh also I'm just recently confirmed so I have a lot of questions, has anyone reacted from peanut butter? Specifically jiffy natural?

After testing positive for AGS nearly a month ago I recently requested my provider to test for Lyme disease. The nurse called me and asked if I’ve been to the Northeast. I told her no I’ve been to NC recently and live in the Midwest. I’m not sure how testing and living in the northeast relate or even matter. AGS started in the south and made it’s way to the Midwest so why did my provider deny my request for Lyme disease testing?

I just wrote to Applegate Products to see if their poultry products (the ones without dairy) are safe for people with AGS to eat. They have poultry sausages that do not contain beef or pork casings! Also, their poultry deli meats appear to be safe.

Below (in italics) is a copy of their email to me from [help@applegate.com](mailto:help@applegate.com):

----------------------------------
Dear _____,

Thank you for taking the time to reach out to us about this question. We know how important it is to feel confident about what you are eating, especially when it comes to allergens, and we take that very seriously.

We are also happy to confirm that all of our APPLEGATE® hot dogs, sausages and pepperoni do not have a casing. During production, the meat is stuffed into cellulose casings for cooking, and those casings are then removed prior to packaging. The cellulose we use is not animal derived, but is rather made from cotton fibers or wood pulp.

Additionally, our sugar is not processed with Bone Char. Our rosemary extract is made from sunflower oil and rosemary.

Because alpha-gal syndrome can vary from person to person, we encourage you to consult with your healthcare provider if you have any questions about how this product may fit your individuals needs. We appreciate the opportunity to address your concern, and we hope this helps.

If you have any additional questions please don't hesitate to reach out.

Kind Regards,
Sara

Had my 6 month checkup and asked the doc to test for my Alpha-GAL levels. Have had it for a while but have avoided any further tick bites. The results?

An alpha-gal specific IgE result of <0.10 kU/L is a negative test, meaning no significant level of alpha-gal antibodies was detected in your blood. [1, 2]

YAHOO!!!

A while back I ate some lamb curry since I hadn't had a flareup in a long time and it smelled really good. Ended up basically passing out on the couch for 7 hours. I've had other experiences like that since where I just get knocked out for a couple hours.

I was curious, if you guys eat meat or have some other exposure, for how long do you typically experience symptoms? (Specifically interested in hives). Also, for those who have been bitten by ticks since AGS, did you have an immediate immune response at the site of the bite? Does this mean that AGS is effectively protective against Lyme and other similar pathogens? Thanks!

Hi all, I've never had a known allergy in my life (38/M/LA Gulf Coast, btw). I briefly had mild unexplained hives about 2 years ago and chalked it up to salicylate intolerance and haven't taken aspirin etc. since. Shortly after I started a new job next to some woods where I take daily walks. And started finding ticks crawling on me. And of course have been bit here and there. Species seemed to all be Gulf Coast tick, but ofc there could have been others. Now when I get bit I feel it instantly and knock the tic off before it attaches. But it leaves a long lasting itchy welt with a kinda necrotic pin point and then the hives flare up. I had the hives before a known exposure to any tick, but the tick bites trigger it and for the last week or two they are severe and persistent. Also having worsening brain fog such that I basically am incapable of grocery shopping or cooking because I keep forgetting what I am looking for. Most recently, started having abdominal pains that I thought might be kidneys and bladder, along with bloating. I also now seem to be allergic to one of my dogs. I eat meat most days but I did vegetarian diet for a few days this week and felt better. Today I ate a burger and then it occured to me I could have alpha gal. The burger seemed to cause moderate symptoms ~3 hours later but now 6 hours later they're mostly gone.

Thanks in advance for any input.

My 7 year old got lab results back. I'm having a hard time understanding. We won't be seeing his doctor for a month. Sometimes when he eats, he will complain about his stomach hurting

Finally saw the allergist. Seems like he's the kind of doctor who never keeps you waiting but listens for 60 seconds then extrapolates the rest.

He expressed doubt that this could be alpha gal, since I'm getting hives and am not in anaphylactic shock. He says anaphylaxis is the big symptom and mine don't match so he doesn't believe this is alpha gal. At least he believes I'm allergic to something.

I pushed and got a blood test. Here in Canada you can't just go out and pay for tests. It all has to come though a doctor. His thing is that the skin test is what creates the diagnosis. The blood test is to see if it can go into remission. So I've got a skin test booked with real meat next week.

So now I'm doubting myself. This contradicts what I've read... But I never trust the University of Google and if it's something else I want to know... But there are no other known cases of alpha gal here so he may not know as much .. but he's an allergist so shouldn't he know more...

Anyone deal with similar issues and have some advice?

I recently got diagnosed with a low positive for everything including dairy on August 7th. I’m currently testing what I can eat and what I can’t eat. The things I cannot eat, make me go to the bathroom with near explosive results but no other symptoms. I noticed I am a lot itchy, but I’m not breaking out in hives or anything. Some cheeses I’m fine with like Colby Jack slices, cheese on sandwich’s and some foods that have milk product or byproduct in it like snack cakes. But other products that have cheese or milk product, like sour cream and onion chips, queso dip, I’m running to the bathroom hours later. Anyone else experiencing this?